Saturday, June 15, 2013
Memorial Day
With Aunt Jenny and Uncles Jon and Paul visiting we had a really fun Memorial Day. We did go on our yearly pilgrimmage to visit Aunt Katy's grave where the girls got to hear some of Aunt Jenny's memories of Aunt Katy (mom was too little to have any memories to share) and I think they really enjoyed learning more about their departed aunt.
My sweet, sensitive Mikayla also wanted to visit her friend Lucy's grave. Lucy drowned a year ago and ever since Mikayla has said she is one of her angels, always nearby and making Mikayla feel less lonely. I got directions to the cemetery from Lucy's mom, but it wasn't until I got there that I realized finding Lucy's grave was going to be like finding a needle in a haystack! Luckily the Spirit was with us, because once I finally parked and decided to look around Mikayla pointed me in the right direction and we couldn't have been more than 50 feet from Lucy's grave site. That little girl is so inspired!
School's Out and Summer's On
I've been really busy with the end of school, Aunt Jenny and Uncle Jon and Uncle Paul's visits, and playing cruise director now that school is out. But I have a few minutes tonight so lets get updated.
First, and update on Carter:
The new medication, Onfi, that is supposed to work on drop attacks is still working! He hasn't had a drop attack since he started taking the medication at the beginning of May!!!!! Unfortunately he's going through a stage right now where he likes to spit up his medication so we've had a few myoclonic and grand mal seizures but as long as we can get the meds down and keep them down we seem to have the seizures under control! Which means for now we have put the dreaded ketogenic diet on the back burner and are LOVING the new freedom that comes with being able to leave our man from time to time for silly things like a DATE (something we hadn't done for, literally, 6 months) which we got to enjoy just in time for our anniversary (happy 11 years, babe!) We also have been able to take his helmet off (again provided he doesn't spit up his medication) and he's happy to run and climb and play with his sisters. He gets worn out easily on this medication, which isn't always a bad thing as it allows mom to get a break once in a while. Fingers crossed and prayers said that we have finally gained sustainable stability...
Secondly, Mikayla: The results of her muscle biopsy show that there is no disease in her muscle tissue. So now we can mostly rule out anything that would cause her heart muscle to degenerate, something that is very encouraging. Unfortunately it means we are no closer to finding a diagnosis about this girl and now we just get to watch and see how she continues to develop. Carter has now surpassed her in size, although he is a big boy, but Mikayla doesn't seem to mind. She's really excited to start kindergarten, and just like her big sister before her, asks almost every day if today is the day that school will start. We are so grateful for the wonderful special ed preschool she attended for the last two years and we are sad to have graduated. Mikayla had almost her entire primary class in that preschool for one reason or another, and they had a great time together, eventhough quite the love triangle developed (or maybe quadrangle?). Here she is at graduation with her admireres, 2 of which have already proposed:
Third, Alyssa:
finished 1st grade just as strongly as she started it. A couple of tears were shed on the last day. This is one Momma who is proud to be wrong and so grateful I didn't change Alyssa's teacher. Ms. East was amazing and really grew to love the kids in the class. After kindergarten Aly wanted to grow up to be a veterinarian, after 1st she has decided to be an astrophysicist in order to prove the exhistance of life on Europa--I'm not sure what we're going to do with her after 2nd grade!
First, and update on Carter:
The new medication, Onfi, that is supposed to work on drop attacks is still working! He hasn't had a drop attack since he started taking the medication at the beginning of May!!!!! Unfortunately he's going through a stage right now where he likes to spit up his medication so we've had a few myoclonic and grand mal seizures but as long as we can get the meds down and keep them down we seem to have the seizures under control! Which means for now we have put the dreaded ketogenic diet on the back burner and are LOVING the new freedom that comes with being able to leave our man from time to time for silly things like a DATE (something we hadn't done for, literally, 6 months) which we got to enjoy just in time for our anniversary (happy 11 years, babe!) We also have been able to take his helmet off (again provided he doesn't spit up his medication) and he's happy to run and climb and play with his sisters. He gets worn out easily on this medication, which isn't always a bad thing as it allows mom to get a break once in a while. Fingers crossed and prayers said that we have finally gained sustainable stability...
Secondly, Mikayla: The results of her muscle biopsy show that there is no disease in her muscle tissue. So now we can mostly rule out anything that would cause her heart muscle to degenerate, something that is very encouraging. Unfortunately it means we are no closer to finding a diagnosis about this girl and now we just get to watch and see how she continues to develop. Carter has now surpassed her in size, although he is a big boy, but Mikayla doesn't seem to mind. She's really excited to start kindergarten, and just like her big sister before her, asks almost every day if today is the day that school will start. We are so grateful for the wonderful special ed preschool she attended for the last two years and we are sad to have graduated. Mikayla had almost her entire primary class in that preschool for one reason or another, and they had a great time together, eventhough quite the love triangle developed (or maybe quadrangle?). Here she is at graduation with her admireres, 2 of which have already proposed:
finished 1st grade just as strongly as she started it. A couple of tears were shed on the last day. This is one Momma who is proud to be wrong and so grateful I didn't change Alyssa's teacher. Ms. East was amazing and really grew to love the kids in the class. After kindergarten Aly wanted to grow up to be a veterinarian, after 1st she has decided to be an astrophysicist in order to prove the exhistance of life on Europa--I'm not sure what we're going to do with her after 2nd grade!
Thursday, May 9, 2013
Crazy May
Its been a while because May around here is like Christmas for most people. Its the plethora of graduations, recitals, field day, dance festival, etc that happen as school winds down. Add to it the array of birthdays and anniversaries in our family and its busy, busy, busy!
Congratulations to my big brother, Mike and his wife Mindy on the birth of their 4th child, little Benjamin David! Born May 8th at 4:26pm
Next, for those of you wondering how Carter is doing here's the latest. After some good weeks we lost any semblance of seizure control a few weeks ago, and not just the drop attacks but grand mal and myoclonic seizures erupting every few days. After speaking with the doctor we were resigning ourselves to starting the ketogenic diet when the doctor suggested there was one more pharmaceutical option: Onfi. A new medication recently approved by the FDA specifically for atonic (drop attacks) seizures. We decided it was our last chance to avoid the upheaval of the keto diet so after talking to the pharmacies (its a new drug, remember?) and the insurance we were able to get Carter started on it. After 1 week he was completely seizure free! We've had false starts like this before but we are encouraged. We've had one seizure in 8 days! Thanks for all the help and prayers, they are definately paying off.
Congratulations to my big brother, Mike and his wife Mindy on the birth of their 4th child, little Benjamin David! Born May 8th at 4:26pm
Thursday, April 11, 2013
medical updates
Since I know some of you are always wanting to find out what's going on with my kid's medical issues here is a quick update:
Mikayla- had an EMG which is a nerve-connectivity test done by inserting needles into the muscle and sending an electric signal to see if the muscles are getting the signals from the brain. Everything looks good there, meaning there isn't any nerve damage (except bi-lateral damage to her carple tunnel nerve which is probably what is making fine motor skills so delayed) so the next step is the test the muscle. We did that last week by taking a muscle biopsy (an orthopedic surgeon made a 2" incision in her thigh nearly to the bone and cut out a piece for testing) and are awaiting the results. They told us it would be a week-10 days for results so we will hopefully hear something any day. They are testing for degenerative muscle disease as well as mitochondrial disease and we will see if that gives us any more clues. She is recovered from her surgery now the proud owner of a narly scar on her left leg.
Carter- We read THE book on the ketogenic diet and the research Johns Hopkins has done regarding it and met with the dietician and nurse practitioner at PCMC that make up the Keto team there. They sent us home with some sample menus and a food preferences/diet log to fill out. Its a pretty hard-core diet so we not taking the decision lightly. In the mean time we have increased his medication to the maximum dosage and the neurologist is considering adding a 3rd medication to his regimen, something we aren't too keen on doing. So far he is adjusting to the medication well and tolerating with few side effects, in fact some days he's his old cheerful self. We also continue to take him to the chiropractor (originally every day, now every other) and that seems to corelate with his seizure activity. On days when he has held his previous adjustment well he has few to no seizures, on days when he is completely out of alignment he has more seizures. We can't yet tell if the seizures cause the misalignments (injury from falling and such) or if the misalignment causes the seizures. However because there does seem to be a connection we will continue to persue it. Carter has good days and bad days, but we are grateful that lately it seems more good than bad. He's had stitches twice and needed his rescue meds more than I am comfortable with but we are loving the 2-6 day stretches of seizure-free time we are having. At this point we have to hurry up and wait to see what the next step is going to be but we have set things in motion to continue to move forward.
As always, thank you so much for the prayers and positive energy you are sending our way. We know sometimes we can get a little myopic and self-centered but we really appreciate all the wonderful family and friends in our lives who are there to buoy us up and help in anyway they can--some days that is the only thing that keeps us sane. We love all of you! God bless!
Mikayla- had an EMG which is a nerve-connectivity test done by inserting needles into the muscle and sending an electric signal to see if the muscles are getting the signals from the brain. Everything looks good there, meaning there isn't any nerve damage (except bi-lateral damage to her carple tunnel nerve which is probably what is making fine motor skills so delayed) so the next step is the test the muscle. We did that last week by taking a muscle biopsy (an orthopedic surgeon made a 2" incision in her thigh nearly to the bone and cut out a piece for testing) and are awaiting the results. They told us it would be a week-10 days for results so we will hopefully hear something any day. They are testing for degenerative muscle disease as well as mitochondrial disease and we will see if that gives us any more clues. She is recovered from her surgery now the proud owner of a narly scar on her left leg.
Carter- We read THE book on the ketogenic diet and the research Johns Hopkins has done regarding it and met with the dietician and nurse practitioner at PCMC that make up the Keto team there. They sent us home with some sample menus and a food preferences/diet log to fill out. Its a pretty hard-core diet so we not taking the decision lightly. In the mean time we have increased his medication to the maximum dosage and the neurologist is considering adding a 3rd medication to his regimen, something we aren't too keen on doing. So far he is adjusting to the medication well and tolerating with few side effects, in fact some days he's his old cheerful self. We also continue to take him to the chiropractor (originally every day, now every other) and that seems to corelate with his seizure activity. On days when he has held his previous adjustment well he has few to no seizures, on days when he is completely out of alignment he has more seizures. We can't yet tell if the seizures cause the misalignments (injury from falling and such) or if the misalignment causes the seizures. However because there does seem to be a connection we will continue to persue it. Carter has good days and bad days, but we are grateful that lately it seems more good than bad. He's had stitches twice and needed his rescue meds more than I am comfortable with but we are loving the 2-6 day stretches of seizure-free time we are having. At this point we have to hurry up and wait to see what the next step is going to be but we have set things in motion to continue to move forward.
As always, thank you so much for the prayers and positive energy you are sending our way. We know sometimes we can get a little myopic and self-centered but we really appreciate all the wonderful family and friends in our lives who are there to buoy us up and help in anyway they can--some days that is the only thing that keeps us sane. We love all of you! God bless!
Spring Break
We had a really great Spring Break this year. The weather was GORGEOUS the whole time and Carter's seizures even decided to cooperate--in fact we went 6 days seizure free during spring break which meant we could really enjoy our time together. Unfortunately Chris still had to work, although he got one afternoon off to join us at the planetarium.
We went to the dinosaur museum and spent time looking at the visiting exhibit about sound waves. Very interesting.
Tuesday Mikayla had a muscle biopsy which turned out to be a little bigger of a deal than I was lead to believe it would be. She was a great trooper but it was a true surgery. They took a piece of muscle from her thigh to test for some different muscle diseases to see if there is anything else we can do to help her get stronger. She is a stubborn girl and refused to take her paid meds but at least she didn't complain about pain. She spent the next couple of days on the couch collecting get well cards and flowers (thank you Finn!) Alyssa read books to her and played games with her sister that they could do sitting down.
Other spring break activities included going to the planetarium, the gateway, the park and hanging out with friends. We also got to have a sleep over and grandma and grandpa's house and see cousins for General Conference. It was a great week!
We went to the dinosaur museum and spent time looking at the visiting exhibit about sound waves. Very interesting.
Tuesday Mikayla had a muscle biopsy which turned out to be a little bigger of a deal than I was lead to believe it would be. She was a great trooper but it was a true surgery. They took a piece of muscle from her thigh to test for some different muscle diseases to see if there is anything else we can do to help her get stronger. She is a stubborn girl and refused to take her paid meds but at least she didn't complain about pain. She spent the next couple of days on the couch collecting get well cards and flowers (thank you Finn!) Alyssa read books to her and played games with her sister that they could do sitting down.
Other spring break activities included going to the planetarium, the gateway, the park and hanging out with friends. We also got to have a sleep over and grandma and grandpa's house and see cousins for General Conference. It was a great week!
Carter is becoming one tough guy!
My sweet little guy is the first of my children to need stitches, and he did it twice in less than two weeks. The first time was due to a drop attack that hit his eye at the breakfast table. He just needed one little stitch just under his eye and he was amazing! They didn't even need to numb him up. Unfortunately the second set of stitches was a bit more traumatic. While at the dentist's office waiting for his sisters to get their teeth cleaned he had a drop attack that caused him to fall against the wooden train table in the waiting room and sent his bottom teeth through his bottom lip. After looking at it the dentist sent us to urgent care to have it stitched up (he only does stitches on the inside of the mouth) who then sent us to UVRMC emergency room so that he could be sedated for the procedure. Once at the ER they decided he needed a CT to make sure he hadn't fractured any of this facial bones, and then he kept waking from the sedation. It ended up being a LONG night. Luckily no serious damage was done (he looked worse than it was) and he got to eat a lot of popsicles to help the swelling go down. Poor Boy! He is learning to be tough, though.
Alyssa's Birthday!
I can't believe my beautiful girl is 7!!!! When did that happen? We had a really great weekend celebrating our Aly-bug (and yes, I do mean weekend). Here are some of the highlights:
For her actual birthday we had her great grandparents come for dinner along with Mike and Mindy and their brood. We had a turkey feast and then showered her with presents...it gets embarassing with the huge pile but what am I going to do? She has a lot of adoring fans.
Lastly, she wanted to go to the planetarium so we did that a week later during spring break. Overall an outstanding birthday for an out-of-this-world girl! We sure do love her!
Wednesday, March 13, 2013
A few reprieves...
I've almost posted a couple of times recently but I've been nervous to share changes when I don't know if they will be permanent, and proven by the ups and downs of the last week.
Last week, Thursday through Saturday were really good days. Carter had very few seizures and we were hopeful the medication was finally taking effect. Then Sunday came and down he went, over and over. The poor guy just couldn't seem to stay on his feet with the frequency of the drop attacks. After 3 days of significant improvement it was a little hard to watch.
We were a little nervous for Chris to go to San Diego Monday but I knew it was important so I sent him anyway. And then we were blessed. Monday evening wasn't going so well and I was so glad to get Carter to bed so the seizures would stop. And then he woke up Tuesday and was fine. Not a single observable seizure all day!!! What a gift! Rather than get my hopes up I chose to just enjoy it, and enjoy it we did. So I was pleasantly surprised to wake up this morning to a continuingly seizure free boy! We had a great day, and after our daily chiropractic adjustment we spent a bunch of time at the park and outside in the beautiful weather. We were 43 hours seizures free when he suddenly collapsed after his nap, hitting his chin on the window sill, and seizing for 30 seconds on the ground. The streak was broken. But you know what? We had a great couple of days and we'll just look forward to more of those rather than dwell on the not-so-great days.
What's next? We see the neurologist again on Friday and we'll see if they have any more ideas of a diagnosis/prognosis. We have also started studying the ketogenic diet at the urging of the neurologist as some children with refractory epilepsy (meaning they are unable to control the seizures through medication) respond very well and can become seizure free on the diet. Its extreme and requires complete commitment and it is very difficult to follow, but if the benefits outweigh the cost than it is something we should at least consider.
While we're counting blessings we are grateful that Christopher's trip to San Diego has been incredibly good professionally and we've had friends help us out while he's been gone. Not to mention the wonderful Janie who helped me sort and de-junk the playroom while Carter was feeling well so he can now safely play down there. And lastly, how gorgeous has the weather been? Winter, we're done with you, welcome spring!
Last week, Thursday through Saturday were really good days. Carter had very few seizures and we were hopeful the medication was finally taking effect. Then Sunday came and down he went, over and over. The poor guy just couldn't seem to stay on his feet with the frequency of the drop attacks. After 3 days of significant improvement it was a little hard to watch.
We were a little nervous for Chris to go to San Diego Monday but I knew it was important so I sent him anyway. And then we were blessed. Monday evening wasn't going so well and I was so glad to get Carter to bed so the seizures would stop. And then he woke up Tuesday and was fine. Not a single observable seizure all day!!! What a gift! Rather than get my hopes up I chose to just enjoy it, and enjoy it we did. So I was pleasantly surprised to wake up this morning to a continuingly seizure free boy! We had a great day, and after our daily chiropractic adjustment we spent a bunch of time at the park and outside in the beautiful weather. We were 43 hours seizures free when he suddenly collapsed after his nap, hitting his chin on the window sill, and seizing for 30 seconds on the ground. The streak was broken. But you know what? We had a great couple of days and we'll just look forward to more of those rather than dwell on the not-so-great days.
What's next? We see the neurologist again on Friday and we'll see if they have any more ideas of a diagnosis/prognosis. We have also started studying the ketogenic diet at the urging of the neurologist as some children with refractory epilepsy (meaning they are unable to control the seizures through medication) respond very well and can become seizure free on the diet. Its extreme and requires complete commitment and it is very difficult to follow, but if the benefits outweigh the cost than it is something we should at least consider.
While we're counting blessings we are grateful that Christopher's trip to San Diego has been incredibly good professionally and we've had friends help us out while he's been gone. Not to mention the wonderful Janie who helped me sort and de-junk the playroom while Carter was feeling well so he can now safely play down there. And lastly, how gorgeous has the weather been? Winter, we're done with you, welcome spring!
Tuesday, February 26, 2013
A very long day with the docs
Today was a very long day at PCMC. Mikayla had an EMG which is a needle test that gauges her nerves and muscles. She was a trooper! They didn't have to sedate her and then she just looked at her book and didn't make a sound as they were sticking electrodes and needles into her muscles-A-MAZE-ING! The doctor was able to get a little more information and they have scheduled a muscle biopsy for a couple of weeks from now. We have hope that his new neuro-muscular specialist will be able to give us answers where so many have failed before, although we mostly want to make sure that there isn't anything degenerating going on.
Carter had his follow up with his neurologist who tweaked his medication and is still hopeful that we can control the seizures with medication. It was working so nicely for almost a week there! (dang that stomach flu that set us back 2 weeks!) He's still having several little seizures/drop attacks an hour and they get worse when he's tired but he loves wearing his helmet which helps set mom's mind at ease and mostly we just bribe him to stay on the couch and watch tv so he doesn't get hurt... The doctor has a few ideas for a diagnosis but its too early to tell and I don't want to name them and have you all google them and get scared so you'll just have to wait to find out.
For now know that we love you and appreciate your concern.
Carter had his follow up with his neurologist who tweaked his medication and is still hopeful that we can control the seizures with medication. It was working so nicely for almost a week there! (dang that stomach flu that set us back 2 weeks!) He's still having several little seizures/drop attacks an hour and they get worse when he's tired but he loves wearing his helmet which helps set mom's mind at ease and mostly we just bribe him to stay on the couch and watch tv so he doesn't get hurt... The doctor has a few ideas for a diagnosis but its too early to tell and I don't want to name them and have you all google them and get scared so you'll just have to wait to find out.
For now know that we love you and appreciate your concern.
Friday, February 22, 2013
A slight setback
Carter had a slight set back this week. On Wednesday he woke up and started throwing up and kept throwing up throughout the day. Probably just a flu bug, but when you can't keep anything down that means you can't keep meds down either, which in Carter's case meant a return of the seizures. He had been doing so well and and back to his happy, smiley, cheerful self since we got home form the hospital. Long story short, we ended up in the ER all night getting him rehydrated and administering his meds through an IV. This worked really well and calmed everything down, however he has had a bad reaction to one of the IV meds they gave him, dilantin, which has left his incredibly weak and floppy--its like having a 34 lb infant! Its been really frustrating for him to not be able to hold his head up or feed himself, not to mention walking around and playing. So we're staying pretty close to home these days and hoping the dilantin will leave his system with no trace, fingers crossed.
Thanks for your continued love and support!
Thanks for your continued love and support!
Friday, February 15, 2013
We got news around noon that Carter was stable and there wasn't anything he needed done that couldn't be done at home so we opted not to stay another night and come home. We still don't have an explainating for what is going on or its cause, and his wake-time brainwaves are still a concern. But he hadn't had a clinical seizure in 24 hours and he was responding favorably to the medication. Since he had been monitored the entire time they have PLENTY of EEG to review. After fitting him with a seizure helmet and sending us home with half of the pharmacy we were finally able to step out in the fresh air, for Carter the first time he left that room in 8 days!
Thursday, February 14, 2013
Cautious Optimism
Happy Valentine's day! First let me say I have the best valentine in the world! Everyone thinks they have the best spouse but I think recent events prove definitively that I'm the winner in that category. So I wish we were together today but with you, every day is Valentine's day! Love you SOOOOOOOOO much!
Now, onto the news about Carter. He has now had 3 nights of normal sleep activity (yay!) but his wake-time brainwaves still don't make any sense. Still, we've made great strides. He has had little to no seizure activity since his grand mal yesterday and last night he started talking again. He is once again bright eyed, although still very tired and a little spacey. Since things don't seem as critical today his doctors are spending more time trying to find a source of the problem so he has a lot of labs ahead of him today, but hopefully the blood-draw will be the most traumatic event of the day.
There is a chance we will be going home, but we've heard that before. So for now we are practicing cautious optimism. We'll keep you updated as the day progresses. Thanks for your continued prayers!
Now, onto the news about Carter. He has now had 3 nights of normal sleep activity (yay!) but his wake-time brainwaves still don't make any sense. Still, we've made great strides. He has had little to no seizure activity since his grand mal yesterday and last night he started talking again. He is once again bright eyed, although still very tired and a little spacey. Since things don't seem as critical today his doctors are spending more time trying to find a source of the problem so he has a lot of labs ahead of him today, but hopefully the blood-draw will be the most traumatic event of the day.
There is a chance we will be going home, but we've heard that before. So for now we are practicing cautious optimism. We'll keep you updated as the day progresses. Thanks for your continued prayers!
Wednesday, February 13, 2013
Roller Coaster Ride
The last 24 hours or so have been a roller coaster ride. Carter had a hard day on Tuesday, feeling not great and quite out of it most of the time. Made for a very whiny kind of day. The good side was that Daddy came up and stayed with him while Mommy went home for the first time and took a bath and slept in her own bed and played with sisters. Daddy had a little bit rougher of a night, with a boy who didn't feel well, threw up his medicine and refused to take more. And then this morning upon waking decided to scare everyone with his first grand mal seizure in nearly a month. Poor boys! I guess they really needed mom back. Because since I came back this afternoon he hasn't had a single seizure!(disclaimer: we think, sometimes we can't see them) And the neurologist told us that his sleeping EEG was once again normal so we're calling today a victory. Trending towards normal is good. The other good news? He said "cracker" tonight! It sounds strange, but since I haven't heard an actual word in more than 48 hrs we found it pretty exciting. Here's to hoping things keep trending up!
And for those of you wondering, there is a slim chance we could come home late tomorrow night (maybe 10%) but most likely it will still be Friday or Saturday, assuming no more setbacks.
And for those of you wondering, there is a slim chance we could come home late tomorrow night (maybe 10%) but most likely it will still be Friday or Saturday, assuming no more setbacks.
Tuesday, February 12, 2013
Finally some good news!
Monday, February 11, 2013
Meetings, Meetings, and more Meetings...
Today wasn't as great as we were hoping, as evidenced by the fact that we are still in the hospital. And after a minor meltdown on my part, we finally have a new plan.
Carter's EEG is showing a lot of seizure activity which in and of itself is worrisome, but the other problem we are having is that between seizures his brain activity is still abnormal. We hope that the same medication that will control his seizures will control the other brain activity but we aren't sure...and we have to control the seizures first! So here we wait, watching out boy and trying new medications. The last 12 hours he's been REALLY out of it, only having brief moments of lucidity. Thankfully that medication is wearing off and hopefully after a good night's sleep (and the new medication we'll start tonight) he will be a little more awake and vibrant tomorrow.
But we spent the day talking with lots of doctors about all of our options. Since he doesn't fit in any box, and he isn't responding to "standard" protocols we are having to think outside the box and come up with solutions on our own. Where's Dr. House when you need him?
But after meeting with pediatricians, hospital neurologists, radiologists, clinical neurologists, and pharmacists we have something new to try and hope to at least get a clue what direction to go in. It means we will be here at least 3 more days, but we hope and pray to be home for Valentine's day. Keep us in your prayers and thanks for the love, concern and service we have received. We are so indebted we could never repay you all. Thanks!
Carter's EEG is showing a lot of seizure activity which in and of itself is worrisome, but the other problem we are having is that between seizures his brain activity is still abnormal. We hope that the same medication that will control his seizures will control the other brain activity but we aren't sure...and we have to control the seizures first! So here we wait, watching out boy and trying new medications. The last 12 hours he's been REALLY out of it, only having brief moments of lucidity. Thankfully that medication is wearing off and hopefully after a good night's sleep (and the new medication we'll start tonight) he will be a little more awake and vibrant tomorrow.
But we spent the day talking with lots of doctors about all of our options. Since he doesn't fit in any box, and he isn't responding to "standard" protocols we are having to think outside the box and come up with solutions on our own. Where's Dr. House when you need him?
But after meeting with pediatricians, hospital neurologists, radiologists, clinical neurologists, and pharmacists we have something new to try and hope to at least get a clue what direction to go in. It means we will be here at least 3 more days, but we hope and pray to be home for Valentine's day. Keep us in your prayers and thanks for the love, concern and service we have received. We are so indebted we could never repay you all. Thanks!
Sunday, February 10, 2013
Sunday's Wild Ride
We had great hopes this morning that things would have normalized and we would be on our way home by dinner time. However, Carter had another bout of constant brain-wide seizure activity this morning and so we were set back a day. We have started some new medication that hopefully, in tandem with his current prescription, keep out boy's brain quiet so that we can get some sleep tonight and be home for lunch tomorrow, fingers crossed. I'll let you know how it goes in the morning.
And a quick thank you to all the wonderful ward members who helped Christopher in nursery today. You are a God-send and a great big reason why we are grateful to live exactly where we do.
And a quick thank you to all the wonderful ward members who helped Christopher in nursery today. You are a God-send and a great big reason why we are grateful to live exactly where we do.
Saturday, February 9, 2013
Update- Saturday morning
Last night Carter got a visit from Dad and sisters! How exciting! It was short because children aren't allowed here during cold and flu season, but it seemed to regenerate his spirit and it was great to hug my girls! Makes you realize how important it is for your family to be TOGETHER, something I think we take for granted so often.
Unfortunately, Carter had a rough morning, having as many as 15 seizures in 1 hour! The EEG results are telling us that his neurons are firing all over the brain and constantly. What this means is that we need to stop all the activity so that we can continue to treat. So he got some medication to quiet his brain and hopefully help us to determine where all of this activity is originating so that we can learn how to stop it at the source. We are increasing his medication today and hopeful that if it works we won't have to add a secondary medication. Fingers crossed for an uneventful afternoon...we won't know more until tomorrow afternoon more than likely as changes can take 24 hours to take effect. Keep the prayers coming and we love you all!
Unfortunately, Carter had a rough morning, having as many as 15 seizures in 1 hour! The EEG results are telling us that his neurons are firing all over the brain and constantly. What this means is that we need to stop all the activity so that we can continue to treat. So he got some medication to quiet his brain and hopefully help us to determine where all of this activity is originating so that we can learn how to stop it at the source. We are increasing his medication today and hopeful that if it works we won't have to add a secondary medication. Fingers crossed for an uneventful afternoon...we won't know more until tomorrow afternoon more than likely as changes can take 24 hours to take effect. Keep the prayers coming and we love you all!
Friday, February 8, 2013
Carter's Adventures at PCMC
Just before christmas Carter decided to liven up life around here by developing seizures. They started out short and separated by longer intervals, however that got too predictable for out little guy so he has decided to have many different types of seizures at many different times. It became necessary this week for us to be admitted to Primary Children's Medical Center (PCMC) in SLC for continuous monitoring to give the doctor's a chance to try and get these episodes under control. While seizures are not fun for anyone, the only medical problems that have arisen from them have been a couple of bumps on the head. Nevertheless we feel it is important to be at the hospital to give Carter the best chance of overcoming this little setback so he can continue with his boistrous life! While we are here he is being continuously monitored and his medication is being tweaked. 
And speaking of things to be grateful for, we are so grateful to you, our family and friends, for the love and support and offers of help, not to mention all the care packages and balloons. We are truly humbled by how many people have reached out to us in the last 24 hours and want to help out family during this "inconvenient" time. We love you all and are forever indebted to you. Thank you also for your prayers on our behalf as we feel the comfort of the Spirit with us continuously. Thank you!
P.S. And for those of you wondering, we will be here at least through Sunday, possibly into next week. It just depends on how he reacts to the medications. Christopher is fortunate to be able to work from home and he'll spend Saturday with his parents and us here at PCMC. We'll just have to see what Monday brings for us.
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