Every couple of years, there is a conference held in the Netherlands for MSS families. They have researchers and doctors attend along with workshops and the ability to connect with other MSS families. The last one was held last summer, which we were unable to attend. It would have been really nice to meet many of the MSS families face-to-face. However, for those of us who couldn't attend, they released a couple of videos from the conference, and less than two minutes in, I grabbed a notebook to take notes (once a scholar, always a scholar, right?).
Here are my notes from the conference:
* Joas' (7 yrs) mom was interviewed and she talked about living one day at a time, not thinking ahead, until she was faced with some of the older kids (18 and up) and she realized that it could be like this for another ten years or more.
--I remember being very much like that in the beginning. One day at a time. One obstacle, then another, always with the thought of less than three years in the back of my head. Then, when I started connecting with other MSS families, I too, saw how long some of these children live (still living). The oldest is Lindsay, who is 34 years old. With that realization comes the fact that in a very real sense, we could be caring for Kai as an adult, and we need to think more long term.
* There are 33 families around the world, and three of them are Dutch. --It didn't say how many are American; I can think of at least five right off the top of my head, including Kai and Lindsay.
* A link between MSS and autism; MSS children are very autistic-like in nature. A small number do have autism. Parents and children to seek better ways to communicate; and most are physical contact seeking, such as putting their arm around their parent's neck.
--Kai doesn't have that skill, but he loves when I put my face to his head. He craves physical contact and usually calms fairly quickly when held
* Most children do not speak but are very social and interested in their surroundings. You need to talk to them and act out what you mean
* They are happy with small things
* MSS is mostly bones--abnormal bone structure, which effects everything; breathing (bones around the windpipe tend to be very soft), curved spine to one side (I didn't realize that was an MSS trait--now I know why Jeremy is developing his "hump" despite all our precautions) --even those that walk often develop the curvature, and hip problems.
It was really neat to see the videos and to hear what other families had to say. I loved watching the kids play around and interact. It both gave me hope and broke my heart because Kai is no where near the level of those kids. There are varying degrees in MSS, and unfortunately, Kai is on the more severe end. I had known this, but watching some of the other kids really brought home the severity. Hopefully, as Kai grows, he will be able to achieve some of the things the other kids can do. He is already beating the odds by being here today.
Tuesday, April 29, 2014
Thursday, April 24, 2014
3 Months
River continues to grow and is constantly doing new things! She is reaching out for toys, smiling, laughing, rolling from side to side, and trying to sit up.
Zuri still dotes on her, and loves to tell people that "when you smile at her, she smiles back." It is a new experience forZuri because even though Kai smiles, he doesn't have a social smile--meaning he doesn't smile in response to your smile. Zuri delights in causing River to smile, and tries to get her laughing. It is fun to watch them together.
Going out is still tricky. Occasionally, River will be content, but mostly she still gets frustrated by being in the car seat. I think I have perfected holding her in one arm and pulling the shopping cart with my other. I think once she can sit unassisted things will be much smoother (famous last words, right?).
Tuesday, April 22, 2014
Welcome to Holland
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
This is from an article in a book I was reading which completely resonated with me. The book is by the mother of the oldest living person with Marshall-Smith Syndrome called: The View from Four Foot Two. Even though Judi's story and our story is over 30 years apart (and still continuing), it is amazing how similar many of the things we have both gone through. We now have the advantage of being able to connect with other MSS families through technology; Judi hadn't met any other MSS family until Lindsay was 29 years old. I know how excited I was when we made the first connection with our MSS family.
Welcome to Holland was so popular when it first came out that it was given to many parents of kids with special needs. I think it would have been really nice to have received something like this instead of just the cold, hard facts. Something that lifts and touches the soul amidst the loss. As stated in the article, the pain of the loss never goes away, but there are amazing things that come from it as well. I know that as hard as things have been, we have also been blessed in so many ways from our sweet boy. He is such a joy, and he brings light and love to our home.
Saturday, April 19, 2014
It Happened Again
Two weeks to the day from the first seizure, he had another--around the same time of night, with the same nurse. This time she called me downstairs in time for me to see the end of it--as he was coming out of the seizure. When I first arrived at his bedside, he was completely unresponsive and still twitching. He appeared to be semi-conscious through this one, but unable to stop. It was heartbreaking, and very scary. I turned on the bright overhead light, and even shined a flashlight straight into his good eye. No reaction. When he pulled out of the seizure, the first thing he did was grab onto his ballard and run it along the rails of his crib a couple of times, then throw his arm across his eyes.
He pulled out of it before we needed to use the rescue medication, and this time his oxygen saturation didn't drop too much, it stayed in the low 90's.
Two seizures two weeks apart, right around the same time, both caught by the same nurse? Just seems very odd. It begs the question, what's going on? Kai had a fairly relaxed day that Saturday as we watched General Conference. I cannot recall anything out of the ordinary happening that day in regards to him.
Is it the nurse? For the life of me, I cannot think of anything she would be doing (recall that I have an infant and I am frequently up throughout the night; I keep tabs on what the nurse is doing, it is how I have caught nurses napping), and every time I check in, everything seems normal.
The scarier question is has he been having seizures that we have been missing? Trust me, if you didn't know what you were looking at, you could completely miss the seizure. It could easily be dismissed as twitching or playing in his sleep. I have seen him "play" in his sleep, and this is something altogether different. The continuous repetitive movement is the key; that and his non-responsiveness.
He had an EEG last week (post on that to follow), and we haven't heard the results yet, but we are hoping for answers.
The nurse also caught the latest seizure on video. She held his arm down to show so that we can see it effecting his arm, his eye, and even his mouth.
He pulled out of it before we needed to use the rescue medication, and this time his oxygen saturation didn't drop too much, it stayed in the low 90's.
Two seizures two weeks apart, right around the same time, both caught by the same nurse? Just seems very odd. It begs the question, what's going on? Kai had a fairly relaxed day that Saturday as we watched General Conference. I cannot recall anything out of the ordinary happening that day in regards to him.
Is it the nurse? For the life of me, I cannot think of anything she would be doing (recall that I have an infant and I am frequently up throughout the night; I keep tabs on what the nurse is doing, it is how I have caught nurses napping), and every time I check in, everything seems normal.
The scarier question is has he been having seizures that we have been missing? Trust me, if you didn't know what you were looking at, you could completely miss the seizure. It could easily be dismissed as twitching or playing in his sleep. I have seen him "play" in his sleep, and this is something altogether different. The continuous repetitive movement is the key; that and his non-responsiveness.
He had an EEG last week (post on that to follow), and we haven't heard the results yet, but we are hoping for answers.
The nurse also caught the latest seizure on video. She held his arm down to show so that we can see it effecting his arm, his eye, and even his mouth.
Tuesday, April 15, 2014
The Good, the Bad, and the What?
Kai went into Primary Childrens for a bronch, and ABR, and an ear cleaning. They did all three at once because he needed to be sedated for the bronch and the ABR, so they did the ear cleaning at the same time due to wax build-up. Because Kai's ear canals are very tiny and narrow, wax builds up in his ears so we get them cleaned every couple of months. The ABR was to retest his hearing to see if there are any changes. The bronch was to reevaluate his airway.
The Good:
Kai's airway looks great. There wasn't any fluid in his lungs and everything looked clear. In fact, they were so impressed with how his airway looked, they are talking about lowering his peep on his ventilator even more! Possibly to a six or a seven. That would be fantastic! He has been doing great on the nine, so I bet he could get away with a lower setting. One step closer to weaning him off the vent!
The Expected:
The ABR showed that Kai's hearing loss is still in the moderate-severe range. His hearing hasn't changed much in the last two and a half years. Bummer. The audiologist said we should be using Kai's hearing aids more. Haha. That's funny. And...I know. The problem is Kai is hooked up to a feeding pump every three hours for an hour. During that hour the chance of spit-up is about 60%. When he spits up, it gets everywhere--especially in his hair and on his ears. Where do expensive hearing aids sit? That's right--the target zone for his spit up. Then there is the 45 minutes or so after his feedings that the chance of spit up is about 30%, so that really leaves a window of just over an h
our in between feedings that wearing the hearing aids is feasible. Honestly, it is just low on my priority list. He doesn't act any differently with them on. We have seen small indications that he can hear better, but overall, he just doesn't care.
The Bad:
Lastly, we have the ear cleaning. Oh boy. Here's my rant. When the doctor came out to let us know that Kai was waking up and to let us know about the results of the bronch, he mentioned that he went in a little deep and Kai's ear bled a little, but nothing to be concerned about. Okaaaay. That sounds concerning to me, but you're the doc, right? So, I let it go.
I was in the waiting room with River while J went in with Kai as he woke up. I waited, and waited. Even the receptionist to the waiting room thought it was a long time and she called over to see if everything was okay. They said Kai had some drainage from his ear and they were waiting to make he was fine. Drainage? Was his ear still bleeding?
Sure enough, when Kai and J finally came out, the wait had been because J wanted to make sure his ear was fine before leaving. However, after having the staff page the doctor several times, and no answer for over forty minutes, the nurse said we could be there for hours before we heard back. Really? So, we decided to leave, but as we were waiting for the elevator, Kai's ear was bloody again. We debated staying (remembering his eye), and River's fussiness made the choice for us. We left.
His poor ear bled for about 2 days (not a lot, just enough to drain out around his ear). Grrr. I know things happen, but he has had multiple ear cleanings while awake and never had this happen.
This was the next day
The What??:
The strangest part of the day came in the form of a statement. When the doctor came in to talk to me, he mentioned sending the results to Country Life. Confused, I said Kai isn't part of Country Life--not knowing what it was at the time. I thought it was an early intervention group or something. The doc looked at his notes and said, "huh, I thought someone said that he was." I told him no, and that was that. It didn't dawn on me until he walked away that it might be a care facility.
Sometime later, when the audiologist came to talk to me, she made a similar comment. This time I clarified, and sure enough, it is a care facility. I told her very definitively that Kai is home--that he has always been home with us. She looked at her notes and crossed out "Country Life," which she had written sometime earlier.
Now, nothing against anyone who for whatever reason or another has a child or family member in a care facility--circumstances and reasons are wide and varied--but that has never even been a consideration for us. We are more than capable of taking care of our child. He is a part of our family, and I can't even imagine having someone else take care of him (nurse respite aside). I am struggling enough with him getting ready to go to preschool next month.
I have to admit that I was a little insulted that they would think Kai was at Country Life. Why would they think that? Where did that come from? Do I not look like I am capable of caring for my child? That really burns me. Errr... I am getting riled up again just thinking about it. For one thing, even though it has been over two years since Kai has been in-patient at Primary Childrens, we are still regulars there. We go up for appointments all the time. Secondly, I brought him in by myself; unaccompanied by a nurse or anyone else (J had some things to take care of at work, so he came a bit later with River, and my mom was watching Zuri). Third, even though the doctor who performed the bronch wasn't Kai's primary pulmonologist (his had a family emergency and we decided not to reschedule), the ENT and the audiologist knew us (again, not Kai's primary ENT and audiologist but we had had interactions with both before). Fourth, the ridiculousness of the registration process: they send an email where I fill out all Kai's info such as medical and surgical history, address, insurance, etc. Then we get a follow-up call which goes over all the information that I filled out in the email. Upon arrival we have to check in at the registration desk, where address and insurance, and sometimes an additional medical form have to be re-verified and/or filled out. Finally, when we are in and the nurse takes Kai's vitals, all the same information is asked again (although usually insurance and address are left out at that questioning). Sometimes (if we are really lucky) when the doctor comes in, he/she asks an abbreviated version of everything that I have now given four times. Seriously. So, I suppose that it shouldn't be a surprise that since I have now repeated the same information anywhere from three to five times, that they would think that Kai resides at Country Life. Ugh.
I can tell you, I was not happy leaving Primary Childrens that day. A part of me questions if they would have been more careful with his ear had they known that he was going home to the care of his parents instead of thinking he was going to a facility. Another part of me wants to rage at the inadequacy of the healthcare system as a whole. There has to be more efficient ways for information to be collected--after all, isn't that what computers and tablets are all about these days? There's a computer in every room, and we have to sign the stupid HIPAA and consent to treat form every single time... I get verifying information, but come on.
I received some great advice from another special needs parent. She said that she prints out copies of her child's information and hands it to the doctors/nurses/whoever needs it, and has them refer to the paper instead of reiterating everything time and time again. I am going to do that! Now, if I can just find the time...
The Good:
Kai's airway looks great. There wasn't any fluid in his lungs and everything looked clear. In fact, they were so impressed with how his airway looked, they are talking about lowering his peep on his ventilator even more! Possibly to a six or a seven. That would be fantastic! He has been doing great on the nine, so I bet he could get away with a lower setting. One step closer to weaning him off the vent!
The Expected:
The ABR showed that Kai's hearing loss is still in the moderate-severe range. His hearing hasn't changed much in the last two and a half years. Bummer. The audiologist said we should be using Kai's hearing aids more. Haha. That's funny. And...I know. The problem is Kai is hooked up to a feeding pump every three hours for an hour. During that hour the chance of spit-up is about 60%. When he spits up, it gets everywhere--especially in his hair and on his ears. Where do expensive hearing aids sit? That's right--the target zone for his spit up. Then there is the 45 minutes or so after his feedings that the chance of spit up is about 30%, so that really leaves a window of just over an h
our in between feedings that wearing the hearing aids is feasible. Honestly, it is just low on my priority list. He doesn't act any differently with them on. We have seen small indications that he can hear better, but overall, he just doesn't care.
The Bad:
Lastly, we have the ear cleaning. Oh boy. Here's my rant. When the doctor came out to let us know that Kai was waking up and to let us know about the results of the bronch, he mentioned that he went in a little deep and Kai's ear bled a little, but nothing to be concerned about. Okaaaay. That sounds concerning to me, but you're the doc, right? So, I let it go.
I was in the waiting room with River while J went in with Kai as he woke up. I waited, and waited. Even the receptionist to the waiting room thought it was a long time and she called over to see if everything was okay. They said Kai had some drainage from his ear and they were waiting to make he was fine. Drainage? Was his ear still bleeding?
Sure enough, when Kai and J finally came out, the wait had been because J wanted to make sure his ear was fine before leaving. However, after having the staff page the doctor several times, and no answer for over forty minutes, the nurse said we could be there for hours before we heard back. Really? So, we decided to leave, but as we were waiting for the elevator, Kai's ear was bloody again. We debated staying (remembering his eye), and River's fussiness made the choice for us. We left.
His poor ear bled for about 2 days (not a lot, just enough to drain out around his ear). Grrr. I know things happen, but he has had multiple ear cleanings while awake and never had this happen.
This was the next day
The What??:
The strangest part of the day came in the form of a statement. When the doctor came in to talk to me, he mentioned sending the results to Country Life. Confused, I said Kai isn't part of Country Life--not knowing what it was at the time. I thought it was an early intervention group or something. The doc looked at his notes and said, "huh, I thought someone said that he was." I told him no, and that was that. It didn't dawn on me until he walked away that it might be a care facility.
Sometime later, when the audiologist came to talk to me, she made a similar comment. This time I clarified, and sure enough, it is a care facility. I told her very definitively that Kai is home--that he has always been home with us. She looked at her notes and crossed out "Country Life," which she had written sometime earlier.
Now, nothing against anyone who for whatever reason or another has a child or family member in a care facility--circumstances and reasons are wide and varied--but that has never even been a consideration for us. We are more than capable of taking care of our child. He is a part of our family, and I can't even imagine having someone else take care of him (nurse respite aside). I am struggling enough with him getting ready to go to preschool next month.
I have to admit that I was a little insulted that they would think Kai was at Country Life. Why would they think that? Where did that come from? Do I not look like I am capable of caring for my child? That really burns me. Errr... I am getting riled up again just thinking about it. For one thing, even though it has been over two years since Kai has been in-patient at Primary Childrens, we are still regulars there. We go up for appointments all the time. Secondly, I brought him in by myself; unaccompanied by a nurse or anyone else (J had some things to take care of at work, so he came a bit later with River, and my mom was watching Zuri). Third, even though the doctor who performed the bronch wasn't Kai's primary pulmonologist (his had a family emergency and we decided not to reschedule), the ENT and the audiologist knew us (again, not Kai's primary ENT and audiologist but we had had interactions with both before). Fourth, the ridiculousness of the registration process: they send an email where I fill out all Kai's info such as medical and surgical history, address, insurance, etc. Then we get a follow-up call which goes over all the information that I filled out in the email. Upon arrival we have to check in at the registration desk, where address and insurance, and sometimes an additional medical form have to be re-verified and/or filled out. Finally, when we are in and the nurse takes Kai's vitals, all the same information is asked again (although usually insurance and address are left out at that questioning). Sometimes (if we are really lucky) when the doctor comes in, he/she asks an abbreviated version of everything that I have now given four times. Seriously. So, I suppose that it shouldn't be a surprise that since I have now repeated the same information anywhere from three to five times, that they would think that Kai resides at Country Life. Ugh.
I can tell you, I was not happy leaving Primary Childrens that day. A part of me questions if they would have been more careful with his ear had they known that he was going home to the care of his parents instead of thinking he was going to a facility. Another part of me wants to rage at the inadequacy of the healthcare system as a whole. There has to be more efficient ways for information to be collected--after all, isn't that what computers and tablets are all about these days? There's a computer in every room, and we have to sign the stupid HIPAA and consent to treat form every single time... I get verifying information, but come on.
I received some great advice from another special needs parent. She said that she prints out copies of her child's information and hands it to the doctors/nurses/whoever needs it, and has them refer to the paper instead of reiterating everything time and time again. I am going to do that! Now, if I can just find the time...
Saturday, April 12, 2014
When Everything Changes
There are times of demarcation in your life; points when everything changes and you can't go back. It can happen in an instant. The before and after. You can know it is coming, such as a high school graduation. Or it can blindside you like a car crash.
One such change in our life was Kai, with all the encompassing "special needs." I still remember vividly the day we found out that something wasn't quite right. We had no clue as to the depth of it, and the small window we did have completely rocked my world.
I remember going back to work a few days later. One of my coworkers (who worked in a different part of the building) discovered I was pregnant. As she gushed about how exciting a baby boy would be, I couldn't help the tears that came. My baby had hydrocephalus. He might not even make it to birth. There was a chance he could be "normal," but the odds weren't good. My baby.
I remember when he was born. A small strangled cry and then silence. The silence was deafening as I laid helpless on the OR table, craning my head and neck to get an upside-down view of doctors backs, seeking in vain to see my boy. They were trying to get Kai to breathe. It took an eternity. Three weeks later, the diagnosis: Marshall-Smith Syndrome. Another world shift. Another point of no return.
Our world shifted again March 23rd at 4:50 am. The night nurse woke us up, asking if Kai has seizures. When we answered in the negative, she said she thinks he is having one. We rushed to Kai's side, but by the time we got there, he had stopped. In fact, if she hadn't recorded it, I would have thought that he was just twitching in his sleep. However, after watching the two video's she recorded, and hearing her explanation on what had happened, it left little doubt in my mind: Kai had had a seizure. I have spent countless hours watching him sleep (that sounds creepy, but when you have a kid who has to be monitored 24/7, you watch him even while he is sleeping), and I have never seen him do anything like that. A wave of the arm here, a twitch of the foot there, but nothing so rhythmic and so prolonged. Add to that he wasn't responsive when the nurse tried to rouse him (she claims quite vigorously), and it is definitely out of the norm.
Still hoping that maybe I was wrong, I posted one of the video's online to a group which has vast knowledge of such things. The overwhelming response was that it looked to be a seizure to them as well.
Into the neurologist we went. He looked at the videos and pulled up Kai's previous MRI and CT scans. He noted that Kai had experienced two small seizures in the first two weeks of life, and was so certain that it was a seizure that he started talking about putting Kai on a preventative medication. Whoa, whoa, whoa. Hold on there. He hasn't had a seizure in almost three years--and I had completely forgotten about the two shortly after his birth--and suddenly you want to put him on medication? No siree. I know way too much about the awful side effects of seizure medication. We settled on an emergency medication (to be inserted rectally--agh!) if the seizure lasts more than five minutes. The doctor said that over 90% of seizures stop on their own, so even if he has one, we wouldn't necessarily need to use the medicine. He also ordered an EEG, which wouldn't show if he had a seizure, but we would be able to see if he is seizing, or more likely to seize. A normal EEG means that everything is operating well at that moment; so it might tell us something, or it might not tell us anything.
I received a crash course in seizures and what to do if he has another. The doctor said Kai had a focal seizure, which means it was a partial seizure--only part of his brain misfired. It is possible that he had a partial seizure instead of a full one simply because he is missing some of the connections between his left and right hemisphere. The seizure occurred in the left side of his body, so it was the right hemisphere of the brain.
We aren't sure why he had the seizure, and we are hoping it is just a one-time occurrence. It is a terrifying and helpless feeling to have your child go through something like that and not be able to do anything about it. I have included the shorter video of his seizure. So far we haven't seen any indication of another one; hopefully it stays that way.
One such change in our life was Kai, with all the encompassing "special needs." I still remember vividly the day we found out that something wasn't quite right. We had no clue as to the depth of it, and the small window we did have completely rocked my world.
I remember going back to work a few days later. One of my coworkers (who worked in a different part of the building) discovered I was pregnant. As she gushed about how exciting a baby boy would be, I couldn't help the tears that came. My baby had hydrocephalus. He might not even make it to birth. There was a chance he could be "normal," but the odds weren't good. My baby.
I remember when he was born. A small strangled cry and then silence. The silence was deafening as I laid helpless on the OR table, craning my head and neck to get an upside-down view of doctors backs, seeking in vain to see my boy. They were trying to get Kai to breathe. It took an eternity. Three weeks later, the diagnosis: Marshall-Smith Syndrome. Another world shift. Another point of no return.
Our world shifted again March 23rd at 4:50 am. The night nurse woke us up, asking if Kai has seizures. When we answered in the negative, she said she thinks he is having one. We rushed to Kai's side, but by the time we got there, he had stopped. In fact, if she hadn't recorded it, I would have thought that he was just twitching in his sleep. However, after watching the two video's she recorded, and hearing her explanation on what had happened, it left little doubt in my mind: Kai had had a seizure. I have spent countless hours watching him sleep (that sounds creepy, but when you have a kid who has to be monitored 24/7, you watch him even while he is sleeping), and I have never seen him do anything like that. A wave of the arm here, a twitch of the foot there, but nothing so rhythmic and so prolonged. Add to that he wasn't responsive when the nurse tried to rouse him (she claims quite vigorously), and it is definitely out of the norm.
Still hoping that maybe I was wrong, I posted one of the video's online to a group which has vast knowledge of such things. The overwhelming response was that it looked to be a seizure to them as well.
Into the neurologist we went. He looked at the videos and pulled up Kai's previous MRI and CT scans. He noted that Kai had experienced two small seizures in the first two weeks of life, and was so certain that it was a seizure that he started talking about putting Kai on a preventative medication. Whoa, whoa, whoa. Hold on there. He hasn't had a seizure in almost three years--and I had completely forgotten about the two shortly after his birth--and suddenly you want to put him on medication? No siree. I know way too much about the awful side effects of seizure medication. We settled on an emergency medication (to be inserted rectally--agh!) if the seizure lasts more than five minutes. The doctor said that over 90% of seizures stop on their own, so even if he has one, we wouldn't necessarily need to use the medicine. He also ordered an EEG, which wouldn't show if he had a seizure, but we would be able to see if he is seizing, or more likely to seize. A normal EEG means that everything is operating well at that moment; so it might tell us something, or it might not tell us anything.
I received a crash course in seizures and what to do if he has another. The doctor said Kai had a focal seizure, which means it was a partial seizure--only part of his brain misfired. It is possible that he had a partial seizure instead of a full one simply because he is missing some of the connections between his left and right hemisphere. The seizure occurred in the left side of his body, so it was the right hemisphere of the brain.
We aren't sure why he had the seizure, and we are hoping it is just a one-time occurrence. It is a terrifying and helpless feeling to have your child go through something like that and not be able to do anything about it. I have included the shorter video of his seizure. So far we haven't seen any indication of another one; hopefully it stays that way.
Wednesday, April 9, 2014
Sleeping on the Job
For the last month or so, Kai has been sleeping. A lot. He will fall asleep sometime just after eleven when the nurse gets here, and sleep until two or three in the afternoon. If I wake him earlier (which I have been known to do) he will be really cranky and eventually fall asleep again. One such day fell on his OT visit.
I woke him about 40 minutes before the appointment, giving him his 15 minute grumpy wake-up time. He did really well for the first part of the appointment, but then he started getting fussy again. One of his favorite things is to lie face-down on the exercise ball. It is great because we can also get his therapy done while he calms down (and enjoys himself). If only all therapy was that fun.
Well, he grew so relaxed that he fell asleep! There was no waking him, even when we put him in his high chair (we wanted to do some oral feeding).
His signal for "time-out, I'm done" is to stick his arm over his eyes. It helps to shut out the light and the extra stimuli that he doesn't want. When we put him in the high chair, he was awake enough to stick his arm up, and every time he would start to drift off into a real sleep, his arm would droop and he would yank it back up over his eyes. It was a hoot. I got a video (not-posted) of it.
....and he finally went out.... He even stayed asleep when I put him back into his crib.
I woke him about 40 minutes before the appointment, giving him his 15 minute grumpy wake-up time. He did really well for the first part of the appointment, but then he started getting fussy again. One of his favorite things is to lie face-down on the exercise ball. It is great because we can also get his therapy done while he calms down (and enjoys himself). If only all therapy was that fun.
Well, he grew so relaxed that he fell asleep! There was no waking him, even when we put him in his high chair (we wanted to do some oral feeding).
His signal for "time-out, I'm done" is to stick his arm over his eyes. It helps to shut out the light and the extra stimuli that he doesn't want. When we put him in the high chair, he was awake enough to stick his arm up, and every time he would start to drift off into a real sleep, his arm would droop and he would yank it back up over his eyes. It was a hoot. I got a video (not-posted) of it.
....and he finally went out.... He even stayed asleep when I put him back into his crib.
Sunday, April 6, 2014
Sunday
A few weeks ago, we all made it to church as a family--all five of us. J took Kai home after Sacrament meeting because he was really fussy. I spent the majority of Sacrament meeting in the mother's lounge, but made it mostly through the other two blocks. After church I took a few pictures of Zuri and River all dressed up (Kai was already back in regular clothes).
Thursday, April 3, 2014
Throwback Thursday: Kai's Eye
People are always inquiring about Kai's eye. I find myself booting up the computer time and time again to show them the pictures of his time in the hospital, and explaining what happened. There are pictures I never posted, and I thought it might be good to just have a post with the before and after pictures.
Background:
We took Kai into the ER at Primary Children's Hospital just after Christmas in 2011 due to respiratory distress. He had had high CO2 levels previously, and we knew that a ventilator was in the near future. He also had a severe diaper rash (so bad that it was continuously bleeding) which we thought was a bad yeast infection. Turns out that he was not correctly absorbing some of the carbohydrates in his specialized formula, and it created very acidic poop, giving him the diaper rash. He would poop, get upset because it hurt, turn blue, try to breathe, fail because of his airway collapse, get frantic, poop again, and the process would start over. Sometimes it would literally take over 45 minutes to change one continuous round of diapers (I timed it).
After he was put on the ventilator and his formula changed to a regular formula, he began to rapidly put on weight, which you will see throughout the pictures. He didn't have to use the calories trying to breathe, and he was able to digest the formula. His diaper rash disappeared within several days after the formula switch.
These photos were taken the day before he was released from the hospital on the ventilator in January 2012. As you can see, his eye looks perfectly fine.
That night we went home, thinking he would be in the hospital for several more days. Early in the morning we received the phone call that he could come home that day. We changed our plans for Zuri and took her with us to pick him up and bring him home. We were really excited, but when we went into his room, we were greeted with this sight:
The staff told us he had conjunctivitis and sent us home with some antibiotic eye drops. Neither J or I have had pink eye, so we didn't know that that is not what it was. We were so anxious to get home, that we didn't demand to have a doctor come in and look at his eye. Hindsight is 20/20.
The next day at home. The swelling is slightly better.
The night nurse did some research and told us we needed to get him in to a doctor right away, that it looks like it is a corneal ulcer. So, we made an appointment with the on-call ophthalmologist and sure enough, it was a corneal ulcer. Due to his bulgy eyes, they are drier than normal, and all it took was a little trauma to his eye to cause it.
We tried to find out what happened at Primary Children's that night, but it was not recorded, and even though we put in a complaint, nothing ever came from it. Whatever happened that night, we don't know--no one will fess up. It still makes me mad. However, I try to give the benefit of the doubt, and it is possible that a nurses badge caught his eye as he/she was taking care of him. I have seen it almost happen enough times to think it a plausible explanation.
For the next few weeks, we visited the corneal specialist and the ophthalmologist every few days or so to keep an eye on it. We continued with the antibiotic drops just to make sure there wasn't an infection.
In fact, it seemed to be getting better, and we thought it was clearing up. In actuality, it was getting worse. The spot near the bottom of the ulcer, where it looks as though you can see the iris of his eye again is the trouble spot. It looks as though you can see his iris because you can--his eye had thinned out to the point that the iris was about to come out of his eye.
So, in order to save his eye, we had it sewn closed for three weeks with an amniotic membrane. It created a thick layer over his eye (complete with blood vessels, which is why his eye now appears red). We are no longer in danger of losing his eye, but the result is that he can't see out of that eye. When he is older he may be a candidate for a cornea transplant, but at his age the chance of rejection is too high to make the risk worth it.
This is a current picture! :-)
Background:
We took Kai into the ER at Primary Children's Hospital just after Christmas in 2011 due to respiratory distress. He had had high CO2 levels previously, and we knew that a ventilator was in the near future. He also had a severe diaper rash (so bad that it was continuously bleeding) which we thought was a bad yeast infection. Turns out that he was not correctly absorbing some of the carbohydrates in his specialized formula, and it created very acidic poop, giving him the diaper rash. He would poop, get upset because it hurt, turn blue, try to breathe, fail because of his airway collapse, get frantic, poop again, and the process would start over. Sometimes it would literally take over 45 minutes to change one continuous round of diapers (I timed it).
After he was put on the ventilator and his formula changed to a regular formula, he began to rapidly put on weight, which you will see throughout the pictures. He didn't have to use the calories trying to breathe, and he was able to digest the formula. His diaper rash disappeared within several days after the formula switch.
These photos were taken the day before he was released from the hospital on the ventilator in January 2012. As you can see, his eye looks perfectly fine.
That night we went home, thinking he would be in the hospital for several more days. Early in the morning we received the phone call that he could come home that day. We changed our plans for Zuri and took her with us to pick him up and bring him home. We were really excited, but when we went into his room, we were greeted with this sight:
The staff told us he had conjunctivitis and sent us home with some antibiotic eye drops. Neither J or I have had pink eye, so we didn't know that that is not what it was. We were so anxious to get home, that we didn't demand to have a doctor come in and look at his eye. Hindsight is 20/20.
The next day at home. The swelling is slightly better.
The night nurse did some research and told us we needed to get him in to a doctor right away, that it looks like it is a corneal ulcer. So, we made an appointment with the on-call ophthalmologist and sure enough, it was a corneal ulcer. Due to his bulgy eyes, they are drier than normal, and all it took was a little trauma to his eye to cause it.
We tried to find out what happened at Primary Children's that night, but it was not recorded, and even though we put in a complaint, nothing ever came from it. Whatever happened that night, we don't know--no one will fess up. It still makes me mad. However, I try to give the benefit of the doubt, and it is possible that a nurses badge caught his eye as he/she was taking care of him. I have seen it almost happen enough times to think it a plausible explanation.
For the next few weeks, we visited the corneal specialist and the ophthalmologist every few days or so to keep an eye on it. We continued with the antibiotic drops just to make sure there wasn't an infection.
In fact, it seemed to be getting better, and we thought it was clearing up. In actuality, it was getting worse. The spot near the bottom of the ulcer, where it looks as though you can see the iris of his eye again is the trouble spot. It looks as though you can see his iris because you can--his eye had thinned out to the point that the iris was about to come out of his eye.
So, in order to save his eye, we had it sewn closed for three weeks with an amniotic membrane. It created a thick layer over his eye (complete with blood vessels, which is why his eye now appears red). We are no longer in danger of losing his eye, but the result is that he can't see out of that eye. When he is older he may be a candidate for a cornea transplant, but at his age the chance of rejection is too high to make the risk worth it.
This is a current picture! :-)
Tuesday, April 1, 2014
The Importance of Being Earnest
Last month Heather and I had a girls night out to see The Importance of Being Earnest. I read the story years ago in high school, but had never seen it in play form. I forgot how much I love plays, and I had a blast laughing throughout the acts.
It was in a small theater, and there were no curtains. I loved watching the changing of the sets in between acts.
We had front row seats. When I say front row, I mean there were times when I could literally reach out my arm and touch the actor. It was awesome.
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