Kotah had a sleep study about 2 weeks ago. The results came back this week. There is something wrong...... but they don't really know what. She has over 170 episodes at night but they are not major enough to indicate what the problem is. The only thing they know for sure is that she needs oxygen at night.
I'm very grateful for oxygen, but this is a little frustrating. I did get asked the other day if she could be used as a case study. Maybe that will turn up answers.
Saturday, October 19, 2013
Saturday, October 5, 2013
The little (hilarious) things
Because I don't have a smart phone and can post the everyday funnies online, I keep them locked in text messages on my phone. But my small phone is running out of space, so I am going to type them up here for your enjoyment.
Katie has her own way to sing songs. For example, "all the single ladies" is "all the single legs". "Que Sera Sera" is Que T Que T (Katie).
We saw a fire truck the other day and she was worried that Aunt Jennifer was on fire. Aunt Jenn introduced us to "this girl is on fire". Whenever we sing it, katie always yells and pretends she is on fire.
Aunt Jenn also told us about the screaming goat. So whenever Katie hears "trouble" she screams.
For anyone who knows scripture scouts, baby, pretending to be Nephi sings a song "I want to know for myself". The other day, Katie asked me if she could do something. I said no. She asked WHY? and then proceeded to sing "I want to know for myself".
She loves He-Man. She is also in a learning stage about "poop". Everyone poops. Every animal poops. One day she said "He-Man poops, but his poop is good poop cuz he is a good guy, but they dont have a potty in their castle." She knows that all animals poop because mommy refuses to get anything because it poops. The other day she said "But mom, if we got a small dog, it would just be small poop."
I tried to get her to eat her meatballs the other night and they were different sizes so I called them Daddy meatball, Mommy meatball and Baby meatball. It didn't work. "If we eat them, they will die!"
"I'm a kid and you're a dolt." (adult)
For the 24th of July parade, we walked down 30th and put blankets right on the corner the day before. It was about 330 and katie thought that the afternoon traffic was the parade. She sat and waved to all the cars for about 15 minutes.
She likes to eat Cheetos dipped in peanut butter.....
And today on a slightly teary note, I was downstairs doing laundry. Literally just gone for 1 minute and katie comes down the stairs saying "kotah wants to see you mom". I remembered then that kotah can scoot around on her bum quite well but I had left her in front of the couch so I wasn't too worried. I asked katie "Can you make sure she doesn't come down?" Trying to get katie out of my hair. She said "SURE!" (she loves to help with kotah, most times) and I could here her talking to her. As I am rounding the corner to come up the stairs with a basket of clothes and getting ready to tell katie that sitting at the top of the stairs wasn't really what I meant, I notice that katie has both arms wrapped tightly around kotah who had managed to get over to the top step and she was leaning back to keep her from falling down and just singing songs to her. Katie got to pick out a toy at the store for that one, and I have learned that Kotah can move, FAST!
Now for Kotah:
She can say quite a bit and loves to "sing". Tonight she started pulling herself and walking around the edge of a couch. This is a HUGE thing for her because it was one milestone the doctors were watching for in worries about delays. She still cant crawl on her hands and knees, but to go from sitting to standing and walking on her own is HUGE HUGE HUGE!
She loves to play with Katie. Anything to do with Katie makes her happy. They played peek a boo the other day and the tow of them were laughing for 30 minutes straight.
She loves her da-da and when she saw a picture of Ty the other day she cuddled with it while saying da da da da da. When I took it away (she wasn't supposed to have it) she cried DA DA!
She has been having a little rough week. She cries if I don't hold her. Like EVERY SECOND I'm not holding her. If I lay her down after getting her to sleep, she starts crying IN HER SLEEP until she wakes herself up. Sigh. Ty has been so helpful whenever he is home. Even if he is exhausted he will let me sleep in, or play with the girls so I can get stuff done, or clean the house. She has a sleep study tomorrow night. I hope it provides more detailed answers.
Kotah has two teeth. And when she wants to, she can leave marks. She loves to give flurburts and thinks they are kisses. She loves to play in a room with other kids in it. She can be quite content just watching everyone around her. She loves all of her new baby food. She can't eat alot, but loves to try everything. Katie gave her a cheeto puff the other day and she was so excited to eat what katie was eating. As she is moving around a lot, she is starting to loose her baby fat, but still is very stocky. She loves baths, being outside especially on the grass, Elmo, books, anything that is Katies, anything that is mommys, playing with the drum and drumsticks, Katie's room, Katie's hair, Katie's friends..... and so forth. She tries to say Katie's name "A-E".
Katie has her own way to sing songs. For example, "all the single ladies" is "all the single legs". "Que Sera Sera" is Que T Que T (Katie).
We saw a fire truck the other day and she was worried that Aunt Jennifer was on fire. Aunt Jenn introduced us to "this girl is on fire". Whenever we sing it, katie always yells and pretends she is on fire.
Aunt Jenn also told us about the screaming goat. So whenever Katie hears "trouble" she screams.
For anyone who knows scripture scouts, baby, pretending to be Nephi sings a song "I want to know for myself". The other day, Katie asked me if she could do something. I said no. She asked WHY? and then proceeded to sing "I want to know for myself".
She loves He-Man. She is also in a learning stage about "poop". Everyone poops. Every animal poops. One day she said "He-Man poops, but his poop is good poop cuz he is a good guy, but they dont have a potty in their castle." She knows that all animals poop because mommy refuses to get anything because it poops. The other day she said "But mom, if we got a small dog, it would just be small poop."
I tried to get her to eat her meatballs the other night and they were different sizes so I called them Daddy meatball, Mommy meatball and Baby meatball. It didn't work. "If we eat them, they will die!"
"I'm a kid and you're a dolt." (adult)
For the 24th of July parade, we walked down 30th and put blankets right on the corner the day before. It was about 330 and katie thought that the afternoon traffic was the parade. She sat and waved to all the cars for about 15 minutes.
She likes to eat Cheetos dipped in peanut butter.....
And today on a slightly teary note, I was downstairs doing laundry. Literally just gone for 1 minute and katie comes down the stairs saying "kotah wants to see you mom". I remembered then that kotah can scoot around on her bum quite well but I had left her in front of the couch so I wasn't too worried. I asked katie "Can you make sure she doesn't come down?" Trying to get katie out of my hair. She said "SURE!" (she loves to help with kotah, most times) and I could here her talking to her. As I am rounding the corner to come up the stairs with a basket of clothes and getting ready to tell katie that sitting at the top of the stairs wasn't really what I meant, I notice that katie has both arms wrapped tightly around kotah who had managed to get over to the top step and she was leaning back to keep her from falling down and just singing songs to her. Katie got to pick out a toy at the store for that one, and I have learned that Kotah can move, FAST!
Now for Kotah:
She can say quite a bit and loves to "sing". Tonight she started pulling herself and walking around the edge of a couch. This is a HUGE thing for her because it was one milestone the doctors were watching for in worries about delays. She still cant crawl on her hands and knees, but to go from sitting to standing and walking on her own is HUGE HUGE HUGE!
She loves to play with Katie. Anything to do with Katie makes her happy. They played peek a boo the other day and the tow of them were laughing for 30 minutes straight.
She loves her da-da and when she saw a picture of Ty the other day she cuddled with it while saying da da da da da. When I took it away (she wasn't supposed to have it) she cried DA DA!
She has been having a little rough week. She cries if I don't hold her. Like EVERY SECOND I'm not holding her. If I lay her down after getting her to sleep, she starts crying IN HER SLEEP until she wakes herself up. Sigh. Ty has been so helpful whenever he is home. Even if he is exhausted he will let me sleep in, or play with the girls so I can get stuff done, or clean the house. She has a sleep study tomorrow night. I hope it provides more detailed answers.
Kotah has two teeth. And when she wants to, she can leave marks. She loves to give flurburts and thinks they are kisses. She loves to play in a room with other kids in it. She can be quite content just watching everyone around her. She loves all of her new baby food. She can't eat alot, but loves to try everything. Katie gave her a cheeto puff the other day and she was so excited to eat what katie was eating. As she is moving around a lot, she is starting to loose her baby fat, but still is very stocky. She loves baths, being outside especially on the grass, Elmo, books, anything that is Katies, anything that is mommys, playing with the drum and drumsticks, Katie's room, Katie's hair, Katie's friends..... and so forth. She tries to say Katie's name "A-E".
Saturday, September 7, 2013
Results
Soooo the mri turned up nothing, meaning that the episodes that they were worried about being strokes or seizures are not.
It was a relief, but also a burden when the neurologist told us that. But it was also a very good visit with him. He asked about her medical history and I kinda got frustrated. We have been in the hospital 3 times. We have gone over EVERYTHING with each and every doctor and nurse and tech. Do they not share notes????? So I just did a comprehensive rundown of her, and her immediate family. He persisted and I mentioned that I knew there was hirsprungs in my extended family. This is where it gets interesting. We'd already looked into this the first time we were in the hospital so I thought it was out of the picture. He sat on his computer for a few minutes and then said that the genetic testing they had previously done didn't cover it and that there was a genetic mutation of the disease that can present with different issues and apnea, strokes, seizures were among those. He said that basically it is a disorder that occurs in the brain stem and no matter how many tests they run, it wont show up 99 % of the time on scans. Its a blood test that the insurance may not approve, and even if we can prove that it would run in the family, the insurance would just say "assume that it does" and still not approve it.
It is not life threatening. She may still look like she is having seizures or strokes, but it wont affect the brain. This disease/disorder is in the automotive nerves. Its either this or there is an immaturity in her brain stem. But the doctor seemed to lean towards the genetic mutation. He ordered an eeg and he said that as long as it was normal, we should try to get the blood work done. It was. He also made sense of all of her other weird symptoms/quirks.
Poor Ty and Katie. They sat around in different waiting rooms all day. It was so emotional. We all were (and are still) worn out. By the time we were finally leaving, Katie was close to having a meltdown and I was ready to scream. A nurse came up and gave Katie and Kotah stuffed animals to take home at that moment. She sat and calmed Katie down as she talked about the animals. It helped this mommy!
As we continue to try and pin down the diagnosis, we are trying to adapt to our normal. I think I was looking forward to a diagnosis that would have a fix and eventually everything would be ok. There is no treatment for this. Just a way of life. Identifying symptoms and how to handle them when episodes happen.
Even though it's not some horrible thing, it has worn us all down. I guess the best thing about feeling like this is that even the little things pick me up. A video of The Swan Princess for .99$ to watch for movie night tonight. (and probably 3-7 times on Monday), Katie and Kotah laughing at each other for no reason, Katie's funny sayings, Kotah trying to mimic what we say and do, Ty's reaction to her saying "Dada", all the little things to smile at that on better days I sometimes overlook.
It was a relief, but also a burden when the neurologist told us that. But it was also a very good visit with him. He asked about her medical history and I kinda got frustrated. We have been in the hospital 3 times. We have gone over EVERYTHING with each and every doctor and nurse and tech. Do they not share notes????? So I just did a comprehensive rundown of her, and her immediate family. He persisted and I mentioned that I knew there was hirsprungs in my extended family. This is where it gets interesting. We'd already looked into this the first time we were in the hospital so I thought it was out of the picture. He sat on his computer for a few minutes and then said that the genetic testing they had previously done didn't cover it and that there was a genetic mutation of the disease that can present with different issues and apnea, strokes, seizures were among those. He said that basically it is a disorder that occurs in the brain stem and no matter how many tests they run, it wont show up 99 % of the time on scans. Its a blood test that the insurance may not approve, and even if we can prove that it would run in the family, the insurance would just say "assume that it does" and still not approve it.
It is not life threatening. She may still look like she is having seizures or strokes, but it wont affect the brain. This disease/disorder is in the automotive nerves. Its either this or there is an immaturity in her brain stem. But the doctor seemed to lean towards the genetic mutation. He ordered an eeg and he said that as long as it was normal, we should try to get the blood work done. It was. He also made sense of all of her other weird symptoms/quirks.
Poor Ty and Katie. They sat around in different waiting rooms all day. It was so emotional. We all were (and are still) worn out. By the time we were finally leaving, Katie was close to having a meltdown and I was ready to scream. A nurse came up and gave Katie and Kotah stuffed animals to take home at that moment. She sat and calmed Katie down as she talked about the animals. It helped this mommy!
As we continue to try and pin down the diagnosis, we are trying to adapt to our normal. I think I was looking forward to a diagnosis that would have a fix and eventually everything would be ok. There is no treatment for this. Just a way of life. Identifying symptoms and how to handle them when episodes happen.
Even though it's not some horrible thing, it has worn us all down. I guess the best thing about feeling like this is that even the little things pick me up. A video of The Swan Princess for .99$ to watch for movie night tonight. (and probably 3-7 times on Monday), Katie and Kotah laughing at each other for no reason, Katie's funny sayings, Kotah trying to mimic what we say and do, Ty's reaction to her saying "Dada", all the little things to smile at that on better days I sometimes overlook.
Friday, September 6, 2013
MRI and finally: pictures
I know I should probably post this AFTER the fact, but right now is the only time I have to myself and I need something else to think about instead of my baby crying as I left her in the prep room for the mri.
This past week has been a mess. Pass out episodes, er visit, new doctor, chiropractors, feeding therapist telling me that the previous doctor (the one that called me crazy) called her to try to see if she thought I was making it up and now we are waiting for the brain and neck mri and then later today we see the neurologist.
I'm not sure which I'll cry harder at: them finding nothing wrong, or them finding something wrong. As the week has gone on, Kotah wont sleep unless I hold her, she wont be calm unless I hold her. So needless to say that any cooking or cleaning has been either a miracle, or a scream fest.
Since I haven't posted any pictures, here are some:
first day home:
daddy and his girls
blessing dress. I made a different one first, but when I went to iron it, I forgot that I had put clorox on it to get rid of a stain and hadn't washed it yet...... it left a brown mark, so this is take two. turned out cute!
Katie loves cotton candy!
A science experiment from sid the science kid, showing how the stomach works to digest food.
Hey, if the stomach turns food into mush, it's gotta poop.
Playing in our "mud pool"
SISTERS! So cute! My girls are amazing!
This past week has been a mess. Pass out episodes, er visit, new doctor, chiropractors, feeding therapist telling me that the previous doctor (the one that called me crazy) called her to try to see if she thought I was making it up and now we are waiting for the brain and neck mri and then later today we see the neurologist.
I'm not sure which I'll cry harder at: them finding nothing wrong, or them finding something wrong. As the week has gone on, Kotah wont sleep unless I hold her, she wont be calm unless I hold her. So needless to say that any cooking or cleaning has been either a miracle, or a scream fest.
Since I haven't posted any pictures, here are some:
first day home:
daddy and his girls
blessing dress. I made a different one first, but when I went to iron it, I forgot that I had put clorox on it to get rid of a stain and hadn't washed it yet...... it left a brown mark, so this is take two. turned out cute!
Thursday, August 29, 2013
Surgery, improvement, confusion, crazy and chiropractics
Kotah had her tongue tie and lip tie fixed a few weeks ago. I went in expecting a little tiny blueish laser pointer. I was sorely mistaken. Imagine a tiny barbie sized welding iron that just burns/melts away the flesh. It was quick, no blood, no risk of infection, but definitely NOT painless. Poor Kotah! I had nightmares about it! She recovered ok and her eating improved somewhat, but more so cuz she was in pain and didn't want to eat as much as she usually did. After she felt better it was back to old patterns. The doc wanted her off her monitor as we hadn't had to stimulate her for over three weeks. A week later we had another blue cold baby episode. Back on the monitor. Last week the doctor, in as nice a way as possible, told me I was crazy. Even though this has happened at the hospital. Even though others have seen it. Because she is 20 lbs and no signs of obvious mental delay it must not be a problem. If it was really happening, she would be a failure to thrive. I was pissed to say the least. Yes, I may look like a mom who is loosing it, but its because of what we're living through. I am not making it up.
I spent hours looking things up in ty's medical dictionary. Then I went over to a friends house and got some ideas from online. I called a chiropractor. I wasn't even sure if they would take our insurance but I didn't care. Finances can be so important and they are. We stayed up late last night trying to figure things out. But when it comes to your child, no expense is too great.
The chiropractor was will to work with insurance. We got in that day. She knew what I was talking about! She deals specifically with infants and children. It is called near-miss SIDS and it happens when there is pressure on the brain stem from vertebra being off line. She warned that as she worked on Kotah, there may be more episodes at first. Yesterday was no exception. It was a bad one. I was scared. But the thing that is just a little worse than reviving my child is knowing that if I had called 911, we would be in the hospital with nothing being fixed. So the chiro called a friend who works with these specific cases. One where, after finding nothing wrong with the baby, the hospital sent the parents home with the instructions to shake the baby when it stopped breathing. That was the only thing they could find. I almost cried. Those parents need a hug! They sound just like us! So we are headed to Draper for the next few days to have her taken care of.
I hope this works. Yesterday the sleep specialist called and said it was her understanding that this was an ent issue. The ent has washed his hands of it, the GI clinic also. I need to find new doctors! Something is wrong with my child, but the only one who seems to believe me is a chiropractor (for which I am entirely grateful for) but yeah, try to explain that at the hospital.... I will be called crazy a thousand times if it means finding what will help Kotah. This is becoming so hard. I am quicker to loose my positive attitude each time. But the blessings and miracles still abound.
I spent hours looking things up in ty's medical dictionary. Then I went over to a friends house and got some ideas from online. I called a chiropractor. I wasn't even sure if they would take our insurance but I didn't care. Finances can be so important and they are. We stayed up late last night trying to figure things out. But when it comes to your child, no expense is too great.
The chiropractor was will to work with insurance. We got in that day. She knew what I was talking about! She deals specifically with infants and children. It is called near-miss SIDS and it happens when there is pressure on the brain stem from vertebra being off line. She warned that as she worked on Kotah, there may be more episodes at first. Yesterday was no exception. It was a bad one. I was scared. But the thing that is just a little worse than reviving my child is knowing that if I had called 911, we would be in the hospital with nothing being fixed. So the chiro called a friend who works with these specific cases. One where, after finding nothing wrong with the baby, the hospital sent the parents home with the instructions to shake the baby when it stopped breathing. That was the only thing they could find. I almost cried. Those parents need a hug! They sound just like us! So we are headed to Draper for the next few days to have her taken care of.
I hope this works. Yesterday the sleep specialist called and said it was her understanding that this was an ent issue. The ent has washed his hands of it, the GI clinic also. I need to find new doctors! Something is wrong with my child, but the only one who seems to believe me is a chiropractor (for which I am entirely grateful for) but yeah, try to explain that at the hospital.... I will be called crazy a thousand times if it means finding what will help Kotah. This is becoming so hard. I am quicker to loose my positive attitude each time. But the blessings and miracles still abound.
Friday, August 2, 2013
Third time around
We are in the hospital again. This time was just for a 24 hour PH probe study. The two nights prior Kotah didn't have any apnea spells. But she was right back on track last night. After about the 8th time the monitor went off, as the nurse and I sat there watching her waiting for her to self correct or change colors, the nurse turned to me and asked "do you seriously do this every night?" Honestly though, I think I got more sleep here than at home. Something about having a whole staff full of eyes and ears that are also watching out for her.
We are still waiting for medicaid to come through to get her tongue tie and lip tie fixed. (and hopefully help out with all the other expenses as well) So far our insurance has saved us over 25 grand, but its the amount they didn't cover that is a little stressful.
This time around we were a bit more prepared and I think we have avoided any emotional breakdowns with Katie. And we were well versed on all the support the hospital has to offer, so we've kept well feed and entertained.
We get to leave here in 2 hours and head home to continue life as we know it. Our normal for now. The results of the test will be in in 5 days and we will go from there. I have to count my blessings. I have met two families today that have been here over a month. One waiting for a heart for their baby and one waiting for a son to be recovered from a car accident. But with both these are their only children. I can't imagine what I'd do with Katie if we had to stay that long. Even though they still haven't figured out what is wrong, I am grateful Kotah is healthy enough to stay home most of the time. We'll just keep enjoying and be thankful for each moment.
We are still waiting for medicaid to come through to get her tongue tie and lip tie fixed. (and hopefully help out with all the other expenses as well) So far our insurance has saved us over 25 grand, but its the amount they didn't cover that is a little stressful.
This time around we were a bit more prepared and I think we have avoided any emotional breakdowns with Katie. And we were well versed on all the support the hospital has to offer, so we've kept well feed and entertained.
We get to leave here in 2 hours and head home to continue life as we know it. Our normal for now. The results of the test will be in in 5 days and we will go from there. I have to count my blessings. I have met two families today that have been here over a month. One waiting for a heart for their baby and one waiting for a son to be recovered from a car accident. But with both these are their only children. I can't imagine what I'd do with Katie if we had to stay that long. Even though they still haven't figured out what is wrong, I am grateful Kotah is healthy enough to stay home most of the time. We'll just keep enjoying and be thankful for each moment.
Friday, June 28, 2013
Short quick info
Kotah is on an apnea monitor. It is proving to be very useful and helpful (which i guess is also scary) We saw the speech therapist and the ent doctor. We've been told she is a special needs baby (in a physical aspect i think as most babies hardly go through and need everything she does) They are trying to get us into a GI doctor next week to schedule a scope which would require anesthesia and a day long hospital stay, as long as nothing goes wrong in the surgery room. It's all still kinda crazy!
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